Victories from the Valley: An Unexpected Journey in Adopting a Child with NF1

We had been home from China with our first daughter almost five months when we saw her picture: a sweet face with a deep downcast shown in her eyes. She was six years old. Her file had been passed over by a few families already because of the uncertainties of her medical condition. One eye drooped lower than the other, her tiny lips formed the slightest pout.

A short description read that a visitor noticed her because of how her head hung low, how she separated herself from the crowd, as if in shame. We committed to pray for her, but we knew in our hearts that our commitment would be more that just storming heaven for her family. We knew in our hearts that she was our child, and our commitment would be to bring her home.

Our first daughter, Ruthie was adopted at five years old from China. For almost her entire life, she had lived in a foster home with the same foster family. We have very little information on her past and throughout the course of her adoption, we received minimal information about her progress. When adopting Ruthie, we experienced challenges in China but once we came home, it was a matter of weeks before she began to trust us and then a connection formed quickly. Ruthie has Down Syndrome, and other than some delays, she has a clean bill of health, for which we are so thankful. Her open heart surgery completed in China for her VSD was successful. She is a joy bringer and is thriving at home.

It was always our desire to have a large family and China’s adoption policies made it possible for us to adopt again using the same dossier within a year. And so, with a little girl’s photo and limited information about her, we started the adoption process again.

We had our new daughter’s medical file looked over by an international adoption specialist. The news came back that is was more than likely that our daughter had a genetic disorder called, Neurofibromatosis (NF1). Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue throughout the body. The severity of the NF1 cannot be known at infancy or even childhood, which makes care somewhat complex. The severity of the disorder will only be known as the person grows into adulthood. What a scary diagnosis! But we were not shaken by the diagnosis and felt confident she was our daughter.

We received Psalm 24:7 over her life – Lift up your heads, you gates; be lifted up, you ancient doors, that the King of glory may come in. a verse that speaks of the lifting of heads of gates as the King of glory comes in. No disease would allow her to hang her head low in shame. Our prayer for our daughter is that she would lift her head high as she comes to know who she is as the daughter of the King of Kings. We decided to name her Glory.

Due to the wonders of technology, we were able to video chat with Glory multiple times before we met her in person. In every conversation, we saw a quiet, shy child who was excited to be gaining a family, but sad to be leaving her friends at the orphanage. Many of her friends she has known and grown up with her entire life.

We adopted Glory in half the time it took to adopt Ruthie. From start to finish, she was in our arms within about nine months. The moment we saw her our hearts melted. Although she was now seven, she was very small. She looked at us with eyes wide with curiosity. She quickly began to show us the contents of the backpack she held, photos that her caretakers had given of herself and her friends. She was not the shy little girl we saw in the video chats – she was quite the extrovert!

From China and the very beginning of bringing Glory home, it has been a challenge on all fronts. This little girl who has known only orphanage life comes into a family and everything in her world is turned upside down. She grieves in different ways from aggressive behaviors to isolation. It was challenging to see Ruthie, who had come such a long way, regress in behaviors at home and at school due to her own inabilities to cope with the change. It was challenging for us as parents to love our new child who would reject it at one moment but would want it in extreme measure the next. In our heads we knew this was normal for a grieving child, but no amount of adoption training prepared us for the drastic change that occurred in becoming a family of four. We were in the trenches, but we weren’t going to give up.

What we’ve learned since Glory joined our family is that although it is not always immediate, love is always the answer. You would think that a family who so desired to adopt a child would have no problem loving that child once she was home. Children who have grown up with trauma and loss, those who have experienced neglect in their formative years, are different. There is no other word for it. They are different not only emotionally, but biologically. Their brains are wired and even shaped differently.

A child who has grown up never having been held, never having been affirmed, never having stability, will be different in many ways. Their sense of space is imbalanced, and they do not know the appropriate social cues in most situations. When these children are then given affection and love from a family – they don’t know what to do with it. It is foreign to them – and so, they reject it. They fight it. But they want it so much. This is what we experienced with Glory – the challenges we were experiencing were not because she was a difficult child, they were textbook orphanage behaviors and a result of being raised without a family.

We thought that in adopting Glory, the biggest issue would be her medical care but in fact, healthwise she is doing well. She is being seen by a team of doctors who are monitoring her NF1 closely. Many children with NF have learning disabilities, but we’ve found no signs of that with Glory. We will continue to keep careful watch on her medical situation, knowing that although it is unpredictable, neurofibromas take years to develop and since they are mostly benign, can be very manageable. In the meantime, we want Glory to grow up knowing she is so loved, and we want her to be free to be who she is.

We are thankful for Glory for so many reasons – for how she is teaching us about resilience in change and for how God is using her to heal our own hearts. Although we have and still do experience challenges in attachment and bonding, there is progress. And we rejoice in small victories each day. Glory has grown exponentially in trust, and we know that that is not easy for an older child who has lived in an institutional setting for all her life.

I wish I could say that these challenges were easy for our family to overcome, that through prayer and fasting all was well, but it didn’t quite work out that way. Adoption involves deep loss for the child and in the first few weeks home, I recognized that there were situations that would trigger memories from my own childhood and the trauma I experienced growing up. As I sought help from the adoption community and therapy, I started to see myself in Glory. I began to recall suppressive memories of being very alone – though I had a family, my parents were absent and when they were present, they didn’t protect me or my siblings from trauma. I learned that it was exponentially difficult to give love because of the deep lack of it I felt in my heart from my childhood.

There is no way that we would ever be able to fill the void in Glory’s heart from the lack she has experienced in her seven years of life even if I had grown up in healthy home environment. This is where the One whose name is Love comes in. We cannot do it. We have tried it our way, and we are fully expended. No amount of cocooning or therapy will solve the issues that a once orphaned child has when coming home. The only way to bridge the gap is to love with the Love that is unending, and that is of Christ.

We come home from China and real life set in. We wanted to bond, so we cocooned and in the process, we can isolated ourselves. It is true that our newly adopted children need to be assured of us as their family, and they will benefit from the cocooning period. But as parents, if we are not filled to overflowing with the Love of Christ, if we are burnt out emotionally, spiritually, physically, and have not called on our village for help, we will have nothing left to give – and the ones who suffer the most are the very ones for which we set out to be vessels of healing.

The fiercest enemy of adoption is Satan. And if you think that adoption is not spiritual warfare, ask any family going through the process! We are on our knees for the adoption community, for families, for orphans… because Satan hates adoption. He hates it because it is the clearest picture of God’s redemptive love for the world. And he will do what he can to taint and destroy it. And so we fight, not with words but our weapons of warfare is prayer and faith.

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope… – Romans 5:3-4

When we rejoice in our sufferings, we are fighting against darkness. We have begun to watch as the small victories mount into larger ones; moments of victories turn into days, days into weeks. As hard as it is, we try to rejoice in our trials and see our faith strengthened. We war on our knees for our children, praying hard prayers like, “Help us to love, Lord,” and our hearts begin to soften, and our hearts begin to heal, true love begins to grow. As only He is able to do, he took a difficult situation and used it to bring healing to everyone involved. He is doing the work. For anyone in the trenches, our words to you are: He brought you here and He won’t leave you. For every trial, He has healing for your heart and your child’s in store. And He says you are all worth it.

This is real life. Adoption is messy. It is spiritual warfare. It involves tremendous loss on so many levels. A child who is seven is taken from the only life she knows – is joined with her forever family, with parents who have experienced their own trauma as children and feel incapable on so many levels. Where is the happy ending here? The reality is that life is a journey, a marathon, not a sprint. We will not kneel to the struggles and challenges. We will lift up our heads. The same verse we prayed over Glory, we now pray over ourselves. Lift up your heads… that the King of Glory may come in.

Through adopting Glory, I am finding my own healing from trauma in my childhood. And through healing, I am finding a greater revelation in how to love and parent our girls. I thought I knew what love was before, but God is teaching me what true love is. Love in relation to what He’s done for me on the cross is powerful. It is no small thing. It compels me to love deep, a love that I’ve never before experienced.

As we revel in the small victories and stand firm through the trials, I am reminded that what we experience here on earth is but a glimpse, a shadow of what we will experience in heaven with God.

Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.
– 1 Corinthians 13:12

He is El Roi, the God who sees Me. He sees our children, He sees us – right where we are. And through this seemingly chaotic mess, He is bringing beauty from ashes. One day we will stand before our Maker and there we will have the opportunity to tell Him, “Thank you, Lord. You were worth it all.”

2 responses to “Victories from the Valley: An Unexpected Journey in Adopting a Child with NF1”

Hi! I jumped on this because there are not many that write about nf1. Our second daughter adopted from China shares this condition. It was not caught by the doctor who reviewed her file because the translation of medical terms was incorrect. We knew she was ours anyway! I especially appreciate your spiritual advice; there is sometimes a battle for the souls of our kids that is so unbelievably difficult- unlike anything I had imagined- we need to know that to go forward is to be on our knees! Thank you!